Sunshine Journal

One would think it would be easier to write while on leave. Except, when it's a medical leave I guess it's not as simple as I thought. I struggled to write in the months before surgery and it hasn't gotten any better since. Most often it's because my head isn't clear or there just isn't the energy. And if I can get those two things to coincide with a window of time, I usually need to prioritize it on something else. About two weeks ago I had someone reach out to me via FB messenger that started with, "I came across your blog and it really spoke to me." I was so elated! I found Ben and told him straightaway. I obviously don't want anyone to share my suffering. But that's not realistic, so I was happy my words found someone who needed it. Shortly after that I had someone from my hometown reach out who knew someone having health issues and thought of me. She thought I might be of help because our stories sounded similar. I can't even put into ...

A few weeks ago I started writing a blog about this whole waiting game. It didn't get completed due to dealing with life, not feeling well, and time. Time is actually more a translation of energy for me in most cases. I might have an hour to spare, but I'm too exhausted or in pain to put my thoughts on a page. So then I thought, okay, I'll write a post when I get to announce my surgery date! I gave the go ahead to schedule surgery April 24, 2024. After five weeks they finally gave me a requested date. Which just means they have a date that works for the doctor and they send it to the hospital. The hospital then takes care of the insurance piece and getting prior authorization. But they don't submit for authorization until close to your surgery date because the authorization expires. This is what they told me. I've done a triangle of calling to the hospital, clinic, and insurance these past two months trying to understand this process. Each time I'd call I'd ...

Dr. Warren has just told me that I have severe MALS . I have very little comprehension of this other than hearing what she said. I was feeling a bit distracted about how cold I was. I started shaking, teeth chattering. It was wild. As the nurses wheeled me away they kept telling me they’d get me warm soon. I got to the room and someone brought in a Bair Paws. I had never heard of it. But it’s a little machine that blows out warm air. So they just put the hose under the blankets and voila! I am warm again. A nurse is there working on taking out my IV and the catheter in my right arm for the angiogram. After he takes the catheter out of my arm he has to put pressure on it for 15-20 minutes to make sure it clots properly. It is then that I find out there are restrictions with my arm. I knew going into this that people's arm was a bit sore and bruised after. Sometimes they go through the groin rather than the arm (I'm thankful my arm worked out). But I did not realize I wouldn'...

I had wondered if the doctor realized he called me on a Friday evening (3/15) and it was now in fact, the weekend. We left on a "the schedulers will call you tomorrow..."  Saturday came and went with no call. I worked in the morning and was thoroughly exhausted. I had tickets to take the kids to The Little Mermaid at the Mankato Playhouse . My friend's daughters were in the show and I could not miss it! Lots of coffee was consumed, along with a dash of determination. The show was delightful and they did a fantastic job.  Copious amounts of candy were consumed by the kids during the show. Twizzlers being the top pick! We brought Allison with us since Ben stayed home with Otis. She had dance competition all day before this! Hattie's debut! She was three different characters throughout the show! Lola as Ariel! So proud of her! Monday arrived and I managed to wait until almost noon before I called the clinic to ask about the venogram situation. She supplied that she sent ...

Last week I crossed another test off the list... well sort of. I went in to do an upper GI series with barium. She got me all situated with my gown, explained the process, and then went to get the radiologist to get things started. I'm not sure how long she was gone, but it felt like quite awhile. When she returned she explained that the radiologist thought it'd be better to do a different test entirely. They then reached out to my PCP to ask, but the order was from Oklahoma not her. So she informed me she was going to run all that information by the radiologist and he'd decide. I thought there was no way they'd just change the test on me, but I was wrong and they did. I was a bit perplexed on what to say, so I just followed their guidance and went with it. The nice part was I could change back into my clothes and I got moved to a room with a recliner. They decided I should do a CT Enterography, which is basically a CT scan with contrast dye and you also drink barium to...

This is a lovely collections of tidbits from September - December 2023. Often times these things leave my brain quickly or they all get scrambled together. So I just wanted to write it down for myself. Or if anyone is curious what a snapshot of navigating my health is like. It's not all inclusive, but I tried to document the more tangible things. Well and there are pictures! It's kind of like a journal photo album. September 5, 2023 I made it back to work today for a few hours. And then I took a nap because I was exhausted and my body still hates eating. September 7, 2023 I did the gallbladder flush, which consists of some body prep and drinking olive oil and grapefruit juice back and forth for 15 minutes. If it sounds bizarre that's because it is. Olive oil is not something anyone should just drink. That's my conclusion. It sticks with you for awhile. After this I just had to lay on my side on a heating pad and rest. Minimal stress all day if possible. The idea is that...